CWT: Searching for recovery

[CWT]

Some eight years ago, my wife, after suffering chronic bouts of depression, got a prescription for antidepressants.  After a couple of tries, over the following two years, with other name brands, she was finally put on Effexor XR.  At that time, my health insurance through work covered us both, so the $25 co-pay for the prescription was acceptable.  Her prescription was for 300 mg. of Effexor XR, per day – 150 mg. in the morning, and 150 mg. in the evening.

 

Unfortunately, that insurance "umbrella" didn't last, as my company continued to downgrade their health insurance.  Soon, I was the only one covered, leaving my wife with a grim choice: go off the drugs, or be a huge financial burden to our meager budget.  We chose to begin ordering the Effexor from a supplier in India.  They were very nice, super with the customer service, and priced between a third and quarter of what the Effexor would have cost us domestically.

 

The problems, for my wife, began about five years ago.  At first, it was small memory lapses - things one could usually attribute to being preoccupied, or from having too much on one's mind (at that time, she was responsible for ALL of our finances, as well as keeping track of nearly everything around the house, while I handled minor indoor chores and all the major outside chores, up to and including maintaining the property, house and the cars.)  Over the course of the next two years, the memory lapses became more frequent.  Then, about three years ago, the phone calls to me while I was at work, began -- at first, for minor things; had I seen where she'd left a certain phone book, or, had I misplaced the orange juice in the 'fridge...  Over time, the calls became increasingly strange (and annoying) – had I misplaced her reading glasses?  Did I have her car keys?

 

For a while, it sounded as if she thought I was trying to 'gaslight' her, or something similar (after the famous 50's movie starring Charles Boyer), but then her questions became alarming... did I know what the answers were to simple math sums?  Did I know how to spell certain, simple, common words?  In everyday conversation she would ask me the same question, not just twice, but sometimes five, six or seven times in the space of one hour.  I began to suspect that my wife was suffering from early-onset Alzheimer's.  She, meanwhile, seemed unaware of any serious problems, only complaining bitterly about 'how complicated everything seemed to be getting.' During this phase of her situation, I lost my job - both technology and the collapsing housing bubble causing our current economic depression (call it what you like, my grandparents knew what a depression really was) effectively ended my current career: now unemployed, we had no health insurance even for myself, and no income, save for unemployment insurance.

 

I wanted to take her in to see her Doctor, whom she had not seen in four years.  We made an appointment, despite my being unemployed, and paid the doctor's full visit fee.  My wife had been having some abdominal pains (most likely gas) and that was my pretext for getting her to her doctor.  Once there, my wife stepped into the discussion I began with her Doctor, and told her Doctor that I had been having some concerns about her memory.  The Doctor took that cue and said she would send a nurse in to administer a 'short memory test.'

 

The nurse came in and gave my wife a quiz of thirty oral questions - simple things anyone could easily answer off the top of their head: what county do you live in?  What is the day of the week?  Name three past presidents.  What is your phone number?  My wife scored 23 out of 30.  Her Doctor returned to the room and said that, even on a 'bad day', she (the doctor) would easily be able to score 30 out of 30 answers correct.  She felt that my wife's low score indicated that 'something was wrong' and recommended a complete blood-workup on my wife...then, in the next moment, turned right around and said that 'if it was what she THOUGHT, then the blood tests wouldn't tell her anything.'  Sure enough, the blood tests came back showing my wife as being 'completely healthy and normal.'  The Doctor next said she wanted my wife to go in for a CT-Brain Scan.  At this, we balked.  I told the Doctor we would consider it, and get in touch with her.  We then drove home, and I did some research.  Prices for a CT-Brain Scan in our area could cost anywhere between five hundred to five THOUSAND dollars – and we had no income. A brain scan was out of the question.

 

We did not contact my wife's doctor again.  Meanwhile, my wife's condition continued to worsen. She stopped taking care of the bills because she simply was no longer able to follow the complexity of the process.  She began to allow the house to become cluttered, and she kept adding to the clutter.  When we argued, it was typically a misunderstanding arising from her inability to follow the thread of any conversation for more than two exchanges.  Instead of her former routines of going through the investments, she would spend hours vegging-out in front of the television, watching reruns of old fifties and sixties shows...and with frightening regularity, would forget that she'd seen this or that particular episode a mere 2-3 weeks previously, and happily re-watch the same shows, again and again, swearing to me she'd never seen this or that particular episode before this instance. 

 

She knew, by this time, at some level, that something was terribly wrong.  She began going through her files (she had accumulated, over the years, four filing cabinets filled with all our important papers and documents)… in an effort, I think, to try to organize a mind that was collapsing into chaos.  I was busy in the garage working on the car, one Saturday, while she was doing this, and I came inside for a break to find her sitting on the parlor floor amidst a scattering of manila file folders, completely in tears.  Not only had she forgotten HOW to sort through the files she had, she had completely forgotten WHY she was trying to sort through them...

 

My wife has a double masters' degree from a mid-western University.  She knew 5,000 years of Chinese history.  She has been a college teacher, herself, in the past, and has written editorial articles for newspapers. For nearly twenty years, it was SHE who figured out our income taxes, and TWICE, BEAT the IRS at their own game, even providing them with copies of her calculations as proof, and even got an apology from them on one occasion.  She used to be able to argue rings around me.

 

Now, she couldn't even remember, five minutes into a disagreement, how the argument had started in the first place…

 

Then, one day, I got a notice in the email, from our pharmaceutical supplier in India (an unprecedented event): they were updating their credit card servers, and they recommended to their best customers, an early placement of our next orders.  Fine, I did so, and hoped they'd have things fixed-up within their projected window of 6-8 weeks.

 

Two months later, my wife's supply of Effexor XR was getting low, and I went to place a new order, then got a warning at the website, that the new credit card servers 'were not yet online.' 

I went back and forth with them a few times, via email, to little avail; they didn't accept Western Union money-wires, only Bank-wires, and our bank couldn't decipher their instructions.

 

So, I went online to search for an alternate source, outside the USA, for her Effexor.  And, coincidentally, I stumbled across THIS column of testimonials of other victims of Effexor:

http://depression.about.com/b/2006/06/06/effexor-xr-and-memory-loss.htm

 

 

And I was duly horrified by what I read, there...in particular, by Patricia Nash's last post (# 402 for those interested in some scary statistics).

 

My first determination was to get my wife OFF the Effexor immediately.  But then I read both there, and elsewhere online, about the consequences of going 'cold turkey' off of the drug, and I decided to see if Wellbutrin, on the recommendation of a friend, might help 'ease her off' the effexor...a technique somewhat like using methadone to assist a heroin addict's withdrawal.

 

I ordered the Wellbutrin from our pharmaceutical supplier in India, and it arrived (finally) after six weeks...during which, now that SHE knew the cause of her problems, my wife kept begging me to contact the supplier, to see if there was ANY way to track the delivery, hopefully to speed it up.  She could not WAIT to get off the Effexor.

 

Once we had the Wellbutrin, I put her on a half-dose of it for a few days...and then, when very little improvement seemed to result, I took her completely off of it, and began getting her to take about 1000 mg. of L-Tyrosine first thing in the morning, and about 3 mg. of Melatonin just before bedtime, each night.  Both are naturally-occurring compounds made in the human body and both contribute to the enhancement of certain brain functions (you can read about them online, almost anywhere.)  These particular compounds appear to have been very helpful in keeping my wife's moods fairly stable, while helping to restore her mind now that she is no longer on the Effexor.

 

I wish I could tell you that the recovery has been swift, as I had hoped it might be, but this has not been the case.  My wife has been off the Effexor XR for nine months, now, and is showing a few signs of improvement in both her cognitive functions and her short term memory, every day, but her progress is agonizingly slow...and now that she is regaining her cognitive powers, she is maddeningly frustrated at the slowness of her improvement, and her inability to do so many things she once thought were elementary.  Now, you see, she is beginning to realize the sheer, huge scope of what she lost, under the influence of Effexor.  Some of her biggest problems have included, along with the loss of virtually ALL of her math skills, a major loss of her vocabulary skills: she knows WHAT it is she wants to say, but she will pause and stammer like James Cagney, as her mind spins it's wheels in a frantic search for the right words, which often never come.

 

There is apparently a feeling, in the medical establishment, that the sacrificing of memory and cognitive skills, in exchange for emotional stability, is an acceptable bargain.

 

I would dearly love to get my hands on the moron who came to THAT conclusion.

 

Effexor is a horrible drug; completely horrible.  It has destroyed my wife's mind and put a hole SIX YEARS WIDE in her life – and this is unacceptable to me.  Unfortunately, since we opted to go the 'inexpensive route,' and order our drugs at reduced rates from outside the country, we have virtually no legal recourse available to us.  So I write here to warn any and all others who find this article and column of testimonials, and to add mine and my wife's voice to those already speaking here.

 

To those who might suggest "Well, perhaps the stuff you were getting from India was garbage," let me point out the FOUR HUNDRED OTHER PEOPLE in that column of testimonials on Effexor and memory loss, at About.com, who are basically saying the same thing about this drug, and let me then ask you: what are the odds that all of THESE people ALSO got their Effexor from India?  Pretty slim, I'd say.

 

I have come to learn, since first writing this original post made at the Effexor and Memory loss blog at About.com, that the American psychiatric 'industry' has essentially 'fallen into line' with the generally-accepted line towed by the pharmaceutical industry and the American medical establishment, in general, namely the notion that 'depression is caused by a chemical imbalance in the brain.'  To anyone who happens to still BELIEVE this line of hogwash, I would like to refer you to the book "AMERICA FOOLED: The Truth About Antidepressants, Antipsychotics and How We've Been Deceived" by Dr. Timothy Scott.  The book details how the pharmaceutical companies are the ones who primarily FUND all the 'studies' which confirm the 'safety' of the drugs they push onto the American public, every day.  In other words, the studies are SLANTED to FAVOR the drugs being studied, since the COMPANIES WHICH MAKE these drugs, are funding said 'studies.' 

Pretty convenient set-up, isn't it?

 

Back in Chicago, where I come from, we called that sort of thing a 'racket.'

 

I am not, however, here to argue with anyone regarding the ethics of the AMA or the American Pharmaceutical Industry.  My mind is, as they say, already made up, concerning those organizations.

 

What I am here for is ANY and ALL possible information that might help my wife to recover from EFFEXOR.  She is already long-into withdrawal, with a spectrum of the symptoms detailed throughout this site: micturition urgency, debilitating anxiety, suicidal thoughts, nightmares, severely affected thermal sensitivity... along with the whole HOST of symptoms of taking Effexor, which have been slowly receding, though not nearly fast enough to suit either of us.

 

I have had her taking Bacopa, 5HTP, Lecithin, Omega-3 Fish Oils and Gotu-Kola for months, now, after having discontinued the Tyrosine and Melatonin.  When I lapse in these doses for her, she has detectable 'backslides,' so I maintain them as scrupulously as possible.  Her long-term memory is returning, here and there.  Her short-term memory shows some slight signs of improvement, as have her cognitive skills - she can now follow a conversation provided I am careful to emphasize and restate certain points, repeatedly, and get her to repeat them back to me.  Her motor skills have been the slowest to recover - a former fine-artist and college lecturer who now has trouble dressing and undressing herself, every day.

 

Try to imagine my feelings toward the pharmaceutical industry.  Now SQUARE that result, and you might be coming CLOSE to how I feel.

 

If anyone has any advice at all on the restoration of a brain DAMAGED by this debilitating drug, I will be eternally grateful.  If you have it in mind to 'take up for' or otherwise 'point out the good' being done by the pharmaceutical industry, notably the company WYETH pharmceuticals, now owned by Pfizer, you might better spend your time updating your daughter's 'hello kitty"-themed Facebook page: in other words, save it, please.

 

Thanks for your time, everyone.  ---CWT

[Jemima]

CWT, there are lots of people on this forum who share your outrage, including myself, although I don't think I've ever read such a horror story as this with regard to your wife's memory loss and cognitive dysfunction from Effexor. I'm so very sorry this has happened to you both.

 

Some of your wife's current symptoms may be due to antidepressant withdrawal syndrome. Stopping a drug cold turkey is a hard way to go, but it's probably too late to reinstate and taper slowly. Our discussions under 'Symptoms and self-care' are a collection of non-drug ways to alleviate withdrawal symptoms, so you might want to browse that section as time permits.

 

Welcome to the forum.  You'll find lots of good information and friendly support here.

[Rhiannon]

CWT, I doubt you'll find anyone here defending Big Pharma! (although there may be a Hello Kitty fan or two.)

 

I lost 20 years of my life, my most productive years when I could have been a much better mother and should have been able to advance in my career and save for retirement, due to psychiatric medications and their side effects--in my case both emotionally and cognitively disabling and disruptive.

 

So believe me, you have my fullest sympathy.

 

I've been tapering for three and a half years now, and I feel like I've gotten about 75% of my original cognitive capacity back--but I'm still on meds (at much lower doses now) and I'm 22 years older, so it's hard to say for sure what's what.  Emotionally and behaviorally I'm more stable than I've been since the year I was first started on Prozac.

 

I can't of course say what will happen for your wife, and I'd hate to offer false hope. But I can say honestly that I've seen hundreds of people going through getting off meds and recovering from withdrawal, and what I see as the typical pattern is very slow, gradual but persistent recovery.  It sounds like this might be the path her recovery is following as well--gradual, with better days and worse days, but with overall ongoing improvement.

 

Most of my experience has been with people whose nervous systems were savaged by drug use and withdrawal in various ways, not precisely with folks who've been through what your wife went through, but I suspect the underlying healing mechanisms for a brain damaged by disordered chemistry are probably all quite similar.

 

Please give her my condolences and a hug of solidarity. I know what it's like to have your mind stolen from you. Impossible to describe to anyone who hasn't experienced it.

 

Thanks for telling your story.

 

--Rhi

[Rhiannon]

oh, and: nine months is quite short for the usual time frame of recovery, so don't take that as meaningful. I would expect this process to unfold over the next few years (2-3, with subtle improvement continuing up to 5 or more years out).

 

Also, don't worry if there seem to be setbacks when things seem to get worse again, or periods when the improvement slows and you hit a plateau. All of that is also normal and typical.

 

I can't guarantee any of this, but I think you have every reason to hope for the best. And certainly no cause yet to be concerned about her rate of recovery. It's still quite early days yet, given the history you describe.

 

And one more thing: I would suggest an addition to your reading list of the book Anatomy of an Epidemic, by Robert Whitaker.

[cymbaltawithdrawal5600]

You may want to consider reporting your wife's experience here:

 

https://www.rxisk.org/Explore-Side-Effects/About.aspx

 

I would just do a 'copy and paste' of your first post on this board.

 

Recovery from the effects of psychiatric drugs is possible (and is a fact) but it happens over time and is 'non-linear', slow and often times 'messy'. Recovery stories, set down in black and white by the people who have them, are not easy to find, but they are everywhere.

 

You may want to consider reading (in addition to the information in the Symptoms and Self Care section) a blog by one of the members here, http://beyondmeds.com/.

[mammaP]

CWT I am so so sorry to read this awful history of your wife's experience with Effexor, and your losing 

your job too. It is horrendous that the drug can do so much harm but it does......to many people but

thankfully not always as severe as your wife's experience. There are quite a few of us tapering effexor

and believe me it is no picnic even doing it slowly. I am so glad she has you there for her, many people

are on their own, sometimes literally, sometimes because family don't believe in withdrawal syndrome

and actually want to get people back on the drugs or on even more drugs.  

My own experience was a mild version of your wife's, memory loss and loss of cognitive ability, unable

to string a sentence together because I would forget what I was saying, and feeling so flat and lifeless

that there was no reason to get up or do anything. I am now close to the end of my taper but there have

been some very traumatic times when I have felt suicidal.  

Overall though I have been getting better, I can hold a conversation and now I can do things I haven't

done for such a long time. Simple things like go out for lunch on my own, get my hair done, visit a friend.

 

It has been slow and it's only looking back that I can see the progress I have made. I am sure your wife will

make progress too, one day she will realise that she is improving and it will be like a lightbulb switching on.

 

Huge mamma hugs for both of you, please keep us updated with her progress. 

[CWT]

Thank you all for your kind words, thus far.  I have one addendum/correction, which I neglected to make, to my wife's tale.  Her original prescription was for 150 mg./day of Effexor XR, not 300 mg./day as I originally thought...and for the first couple of years, she only did HALF the prescribed dose, or a mere 75 mg./day, out of frugality.  What she found, over time, was that the half-dose didn't 'do the job' as far as her depression went - and she had an increasing sense of something 'being wrong' as she continued to take the drug.

 

Because of that sense of something 'being wrong', she did not follow her usual instincts, but instead 'trusted' the medical establishment - after all, they are supposed to 'do no harm', right? (laughs bitterly.)  She increased to the FULL doseage, once I began obtaining the Effexor from India...and yes, her mood DID improve, markedly...and that is when the the 'big downhill slide' for her memory and cognitive abilities began.  Reflecting back now, she is terribly sad that she did not listen to her intuition, at the time.  She still blames herself for all this, even though I constantly remind her that she is a VICTIM of a pharmaceutical industry that has lost all sense of ethical behavior, and a medical establishment that has, apparently, lost it's SPINE...

 

---CWT

[Karma]

Hi CWT

 

Thanks for sharing your story.  Please remind your wife that she made the best decision she could make at the time.  We are taught to trust the medical authorities in this country.  It is only when we have to find our own healing path that the mask is removed and we can see more clearly - it makes most of us very angry. 

 

If you had known what you know now you probably would have made a different decision.  There is no value in beating yourself up.  We do the best we can in the moment - if we knew something different we would make different decisions.

 

I am also tapering off of Effexor, but not XR.  I have been on it since 1999.  I did have memory and recall issues at some point, but mine were related to undiangosed hypothyroidism.  Once I got on the right thyroid treatment my brain fog cleared and my memory returned (not immediately, but over a few years).  I am quite sharp now, if I do say so myself - I have to keep track of an amazing amount of complex details in my work and my once extraordinary recall has returned.  Like Rhi, I don't want to give you false hope, but if you can share with your wife that someone else recovered, perhaps it will be benefical.

 

You mentioned that your wife is on Omega 3 - how much?  I am taking 3000 mg of Krill Oil daily.  When I was having uncomfortable symptoms I gently increased my dose until I got to 1500 mg AM and 1500 PM.  This has helped with some of the uncomfortable symptoms, particularly the anxiety.

 

Karma

[CWT]

EFFEXOR XR: A Slick Racket

 

NZ11 Thinks I'm trying to scare people about Effexor XR.  So perhaps I need to reiterate my tale for the community in general, in order to clarify both the intent of my being here, as well as the purpose of this forum.

 

I am here to WARN people about this drug.  If they get scared, as a consequence, well...maybe that's not such a bad thing...when you consider what this drug has done and IS STILL DOING to people, around the world.  

 

My wife of 30+ years was MISDIAGNOSED with chronic depression, by her GENERAL PRACTITIONER, and prescribed a series of anti-depressants by this same doctor.  The last one prescribed was EFFEXOR XR.  The drug was expensive, so for the two years of taking it, my wife HALVED the dosage recommended by her doctor, taking only 75 mg. / day, instead of 150 mg.  She remained moody and irritable, but not as severely.  As I've said, my wife was misdiagnosed by her G.P.  Time spent with a local psychotherapist had already yielded a diagnosis of Borderline Personality Syndrome.  My wife was never able to accept this about herself, and instead chose to believe what she wanted to believe...and the diagnosis of chronic depression was easier for her to accept.

 

In the third year of my wife's use of Effexor, my health insurance plan through my company where I was employed, was changed, in the usual corporate mash-up of excuses which amounted, net, to "we're giving you less coverage for more money."  We could no longer afford to keep my wife covered on my company's healthcare plan.  This would have meant our monthly expense for the Effexor would have come to approximately $500.  My wife was determined to stay on the drug, and went online looking for sources outside the USA.  For a while, we ordered the drug from a pharmacy in Canada, at around half the U.S. domestic price.  Then we discovered a company in India selling the drug for 1/4 the U.S. domestic cost, and we began to order it from them.

 

Since we were now able to obtain the drug so inexpensively, my wife decided to stop taking the daily half-dose, and began taking the full 150 mg. / day dose originally recommended by her G.P.   Her mood swings stopped.  Her overall outlook became much brighter and more cheerful.  The drug seemed like a miracle.

 

Over the course of the next few years, though, things began to change.  My wife began to forget things...little things, at first, things that the both of us credited to her having the task of monitoring our finances as well as taking care of other responsibilities around the house.  Over time, though, things grew worse.  She began telephoning me at my workplace, almost incessantly - sometimes as many as fifteen times a day.  She would rant, for nearly an hour at times, about how she felt there was too much on her shoulders, and I was not holding up my end of the responsibilities in our lives.  She began losing or misplacing things...and calling me up to ask if I knew the whereabouts of these items.

 

At first, my thought was that she was experiencing some sort of early-onset Alzheimer's disease.  She would phone me up, asking how to spell simple words...words like "and" or "the".  I would spell them for her, and she would say "that doesn't look right."   She forgot about the new construction on one side of town, and on a trip over there, was blocked from making a left turn by a new concrete "island" in the middle of the street...a matter she "solved" by driving OVER the island, into the opposing traffic lanes, and getting into an accident with our car.  Some weeks later, while on an errand on OUR side of town, she got lost...and ended up in the next town. 

 

Around this time, I received an email from the drug supplier in India, that they were upgrading their computer servers, and would be offline for as long as 12 weeks, so they were recommending all customers place advance orders to compensate for the supplier's downtime.  I tried to do this, but failed to communicate with them in time.  So I began casting about, looking for an alternative source for the Effexor, and that was when I stumbled across THIS series of testimonials concerning Effexor:

 

http://web.archive.org/web/20140413201621/http://depression.about.com/b/2006/06/06/effexor-xr-and-memory-loss.htm

 

The reason I offer this link via the "Wayback machine" web archive, is that the original series of testimonials was lost when the website About.com changed the site's format, losing a LOT of articles in the process.  I was luckily able to recover the thread via Wayback.

 

I read this series of testimonials with slowly-growing horror, realizing that the evidence indicated not early-onset Alzheimer's, in my wife, but a gradual erosion of her mind caused by Effexor.   Not knowing anything at all about "tapering off", I told her about my discovery, and showed her the website.  She wanted to try getting off Effexor by subbing another drug.  By this time, the company in India was back up online, so we ordered her some Zoloft, but this proved to be worthless, and she gave up after only two days.  It was then that we decided she should quit Effexor completely, so we took her off it cold-turkey, completely, on Jan. 1, 2013.

 

The effects both leading up to, and after the cutoff, were devastating.  Her amnesia was so severe, by this point, that she did not even know who I was, anymore.   She was reduced to the intellectual level of a small child.  She was completely terrified, lost, and debilitated.   I gave up my career and became her full-time caregiver, 24/7.

 

My wife had a double-masters' degree in fine art and art history.  She knew over 5,000 years of Chinese art history.  She taught, in college, 2-dimensional and 3-dimensional design.  She had written op-ed pieces for local newspapers.  She had managed and run a weight-loss clinic for over a year.  She had done our income taxes for two decades, and had even BEATEN the Internal Revenue Service twice, one time showing them her math to PROVE herself, and received a letter of APOLOGY back from them, as vindication of her proof.  She knew how to program 4 different Video Cassette recorders, around our house, and was a fanatic for record-keeping.  She was a proficient computer-user, and knew how to use complex computer graphics programs.  She had been an avid reader, with a huge personal library.

 

Now, she could no longer read.  Her attempts at handwriting resembled long-division.  She couldn't count past ten, much less do simple arithmatic.  She could no longer remember how to cook anything...not even boil water, and SHE had been the one who had taught me how to cook.  She couldn't operate a walkie-talkie, a telephone, a television remote control, or program a microwave oven.  She couldn't sort anything, prioritize anything, forgot anything that I said mere minutes later, couldn't dress herself, bathe herself.  

 

Effexor reduced a woman with a brilliant mind, to a child.  Most of her memory was gone.  Virtually ALL of her personality had been wiped.  Her cognitive abilities were virtually zero.   Her motor skills were confined to being able to do what I told her to do, such as instructing her how to bathe or clothe herself, but if left to do these things alone, she would be as helpess as a one-year old.

 

This is what Effexor XR did to my wife.  So, if you think I have an "axe to grind" here...you're probably right.

 

Among the testimonials, in the link I provided above, one contributor, Patricia Nash, post number 402 in the series, was kind enough to share this information:

 

***************************************************************

"Wikipedia quotes a study in their article on VELAFAXINE in footnote #33

 

^ Harrison CL, Ferrier N, Young AH (June 2004). “Tolerability of high-dose venlafaxine in depressed patients”. J. Psychopharmacol. (Oxford) 18 (2): 200–4. doi:10.1177/0269881104042621. PMID 15260908.

 

They summarized from it( (under side effects):

 

Another study noted weight gain in 29.6% of patients, failing memory (amnesia) in 44.4%, increased fatigue (48%), concentration difficulties (48%), and sleepiness/sedation (37%). [33]"

 

****************************************************************

 

Let's look at those side-effects statistics again...specifically, the AMNESIA: 44.4%

Forty-Four percent of people in the Harrison/Ferrier/Young study, experienced failing memory, or amnesia.  Forty-eight percent experienced concentration difficulties. 

 

If you take the time to read through all the testimonials in the link I provided, above, you find another common thread: the majority of these people who used Effexor, and experienced memory loss or cognitive dysfunction, NEVER RECOVER, whether they quit the drug cold-turkey, or taper off of it.  They never regain what the drug has taken from them.

 

I suppose that sounds "scary."  

 

Well...it should.  Don't you agree?

 

The reason this drug got onto the market at ALL, is because Big Pharma no longer waits for clinical trials to be done by independant labs.  Instead, they PAY for labs to do these clinical trials, creating an instant conflict-of-interest.  You see, if a lab is being PAID by the company that MANUFACTURES the drug, it's in their interest to make findings in favor of the drug...otherwise, they would lose their funding.  So they slant the trials in favor of the drugs, sweep the bad side-effects under the rug as "statistical anomalies", and return favorable findings to the Food and Drug Administration.

 

The culprit behind Effexor XR, is Wyeth Pharmaceuticals.  And they are well-nigh untouchable, now, in a legal sense, because their company was bought up by Pfizer, the biggest drug company on the planet, some years ago.

 

There IS a class-action lawsuit in the works against Effexor, or at least there WAS, a few years ago...I've no idea if it's been settled, or not, but it involved potential birth defects from the use of Effexor, and had nothing to do with amnesia or cognitive loss.

 

Here's the "racket" behind Effexor:  you see, what happens to these people who DO experience the harmful side-effects of the drug, is that their MINDS are "ERASED."  The degree and proportion of these "erasures" vary, depending on an assortment of factors, most of which remain unknown....but the bottom line is this: How does an amnesiac even KNOW that the DRUG is responsible for them losing their mind...when they no longer have a mind with which to perceive any loss?

 

The answer, of course, is that they DON'T know - which makes this drug even more dangerous than previously considered.

 

**********************************************

 

The stated purpose of this forum is "Peer support for tapering & withdrawal syndrome."  Fine.  So, why should there need to be "peer support" at all, for dealing with these drugs?

 

The answer is very simple: The medical establishment and the pharmaceutical industry clearly cannot be relied upon to furnish either adequate support for, or information concerning, these drugs. 

 

This raises the further question of "Why can't the medical establishment or the pharmaceutical industry be relied upon for adequate support for, or information concerning, these drugs?"

 

The answer for that, is even easier:  because the bulk of these drugs are BAD drugs, and shouldn't even be available on the market, in the first place.

 

Think I'm wrong?  Look at the statistics for Effexor again: 44.4% amnesia rate.  In WHAT sane world would this be considered "acceptable"...?  Suppose a drug only caused 44% of mothers to have babies born with no legs...would THAT be acceptable?

 

I'm guessing most here would answer "No."  And you'd be right.  Well, to me, there's not much difference between causing a deformed baby, or erasing a person's mind.  In fact, to me, erasing a person's mind is on a par with murder.  It certainly raises a whole snake's nest of ethical dilemmas, at the very least.

 

So, inasmuch as this forum is here to provide peer support for tapering and withdrawal syndrome, I think it's similarly admissible to serve as a place for warning about the potential negative side-effects of taking these drugs in the first place.

 

I am not an advocate for going off any of these drugs, cold-turkey...or simply cutting off their use abruptly.  I've been down that road with my wife, and it's horrible.  If tapering off a drug gradually can reduce the harmful side-effects of withdrawal, that's wonderful.   I think it's equally important to know the "why" of getting off some of these drugs, however.  They may work for some people...but considering the statistics on "collateral damage" to people who suffer the harmful side-effects of taking these drugs, I think it a fair thing to also issue warnings about taking these drugs at all, in the first place.

 

Some here may think this is "not the place" for such warnings...but to those people I ask this: we are talking about drugs, here, that can cause not just loss of memory, but loss of MIND.  How fair is it, then, to warn these people elsewhere, and then HOPE that, in their mental blindness, they might stumble across this forum, by lucky happenstance, to help them get off the drugs that cost them their minds in the first place?   What do you think their chances are, of finding this forum, if they're warned off the drug elsewhere?  Wouldn't you think it kinder, to have as much information as possible, concentrated in one place?

 

Think about it.  

 

---CWT

Edited May 16, 2016 by KarenB
moved from another Intro thread

[CWT]

Sidebar:  My wife's appendectomy

 

In December of last year, my wife suffered a ruptured appendix.  I rushed her to the hospital, where she underwent surgery the following morning, and then spent six days in near-hysteria, resulting from a bad reaction to the general anesthesia - exhibiting symptoms of dyskinesthesia (involuntary tics and random, jerky expressions and spasms of the face and body) as well as hysterical paranoid delusions of being tortured.  Her shrieks of terror could be heard all over the hospital floor where her room was situated.  Her struggles were epic...she nearly made it out of the room, once, except the I.V. line made her hesitate at the doorway...as it stretched all the way from the bed.  I had been dozing, at the time.  I never left her side, and made sure she never got that far, again.

 

Around Day 4 of all this, the hospital finally send in their resident psychiatrist, who informed me that sometimes side-effects like this, occurring as a result of the general anesthetic, could be alleviated and even put to rest, by the use of anti-psychotic drugs.

 

I gave her the full details of my wife's history with Effexor, stared at her, and said "so you'll understand why I might be skeptical of your advice, regarding any psychotropics."  She said that all she could do was give me the statistics on the "cure rate" of the drug she had in mind.   Statistics which, when she DID give them to me, were admittedly, pretty good.

 

I then asked her what business my wife's General Practitioner had, in making a diagnosis of "chronic depression" on my wife, and prescribing psychotropics.  The Psychiatrist informed me that this was "fairly common and accepted" by now.  I then asked her, point blank, how they could determine the effects of psychotropics on specific people.   She answered that basically, there was no real way of knowing in advance, and that it was all trial-and-error.

 

"So basically, you're using a shotgun technique to try to nail a mosquito," I said.  The Psychiatrist paused, then nodded.  "Yes, that's basically a good analogy," she said.

 

So there you have it, folks...from a PSYCHIATRIST, the "top end" of the mental healthcare spectrum: Basically, the use of psychotropic drugs to treat mental illness, is a CRAPSHOOT.  You roll the dice and take your chances...

 

So much for modern "medicine"...

 

As it turned out...FORTUNATELY...the anti-psychotic prescribed by the psychiatrist, actually DID alleviate my wife's dyskinestheisa and hysterical delusions.   THIS time, she got lucky.

 

I still wonder how many are NOT so lucky...

 

---CWT

Edited May 16, 2016 by KarenB
moved from another intro thread

[nz11]

Hi CWT ive followed you over here and was going to comment on the transferred posts.

 

I am sorry to hear of your wife's plight. It is just tragic what is being done to people in the name of 'First do no harm'.

 

Sadly these are the sorts of stories that are all too common here.

 

Everyone here has been iatrogenically harmed by uninformed consent. 

 

We are all fully aware of the side effects and withdrawal symptoms.

Yes i am also all for being fully informed as well. But i am learning there is a time and a place. For someone who has been on the drug for 20 yrs and is suffering akathisic trauma from a too fast taper and reinstated and trying to stabilize they may not find it helpful to be given an informed side effects bomb and told of the hundreds of side effects that the drug causes and to get off as soon as possible.

But you dont want to panic someone into jumping off the moving train again.

For someone who hasnt yet boarded the train then yeah go for it.

 

I would not give up hope for your wife i also feel 9 months drug free is early days. I would like to tell you that i am 5.6 yrs drug free and still improving.

The disabling brain fog is still clearing to new levels. This is a long journey.

 

 

Talking about antipsychotics...is your wife still taking them? You didnt put it in the drug sig so i guess she isnt taking it now..?

I'm surprised you allowed your wife to take this after your experience.

[btdt]

I can certainly identify with some of your wife's issues.  I am sorry this happened to both of you and to any of us.  I know your trying to do good here I understand it as I too often can't resist some things that are the truth but have potential to hurt new people.  There is a line we straddle here of not doing more harm and trying to be forward thinking and proactive in developing a truth bases for the site to have some scientific sustainability... I know some will say that is quaint coming from me... as I often can't resist doing exactly what your post does... tell the truth that could hurt.  

 

What others here may not understand is the devastation of not just brain fog but something more severe... I think your wife and I have a lot in common but I will talk more to you about this privately if you like.  I am not sure anything I have to say would be of help but I would give it a shot.  I am not always well and when I fall off the cliff so to speak I may be less than useful to you or myself... so you may have to wait for a reply or take what I say in a not good state with a grain of salt... I am sorry this is not who I want to be ..it just is sometimes beyond my control. 

 

The one thing you missing here is something I too miss when I am flowing beyond my shores with the strain of the truth... 

 

Some people are in the early stages while you seen the outside of this looking in the inside is at least as bad as the outside I would guess worse... I have not seen the outside so I lack that perspective.  There are state early on that are hard to explain to a person who has not lived it... some people have a very scary and difficult time trying to survive this and some do NOT survive this.  They are my people... I can't risk them... not one.  If we tell them all the horror stories of not recovering they may well give up and I can't risk that either... I do no sit and hold myself responsible for the decisions of pharma or the FDA but I do try to stifle myself and offer some hope... when I can.  I could not always do this I did not have the self control and I will admit sometimes still I don't have it.  

 

Your seen how badly your wife was affected you watched from the outside... maybe she tells you all maybe she doesn't.  I know that if you think about this it will made some sense to you.  There is a slim chance of finding a website like this when your alone on your own and in cold turkey withdrawal dealing with brain issue... it took me 8 months to find an old wd site called paxil progress ... it likely took me that long to be able to type a search into the computer as I was unable to sign into my own email for months I could not see I could not think... I did not know what was wrong with me.. many doc and hosp visits did not help..so I know it can be a rough go.  Especially when your doing it alone... many many people are doing this alone without support or understanding so should they be lucky enough to find this place ... we have this fence we sit on... most of the time to keep balance with phych safety and truth and hope... Hope is a huge part of being able to get thru this we try not to kill it.  So that is what is what is going on here a bit of care for those others who are in the same situation as your wife who may not have anyone to help them... it may not be all that palatable but it does make sense. 

 

inside it can get real bad... when it does this is a place of safety for many people where they can be whatever they are and say their truth ... the things they can't say to other people... who would not understand it... in my heart I am sure this place and other places like have saved lives of people in the thick of this horrid situation.  That is important... it is the most important thing second is the truth... and believe me people have been trying to get this stopped for years. 

 

Today and in the past it has been that for you too a place to state your truth and your believed by me at least.  I hope this means something to you... though believe me when I say all of us here know that is not enough to change anything.. I too want change I too wish for my life and health back.. I too grumble make upsetting posts... I push always and sometimes get slapped down for it and I deserve and expect it.  Maybe another site for things like this would be a better place to tell all the truths but I am here... and I don't feel able to be at all the other sites.  There are people trying to advocate on behalf of those of us who can't quite muster it.. there are places for that... I have listed some of the people in this post which may be disjointed now as I have ... jumped around a bit and lost the plot of what paragraph contains which information... it is messy in my head... I bet you get that is part but not completely...it is scary. I try to improve I search for answers and things to help... I will keep trying. 

 

There have been many site working on this not just SA... if you want I can list some but it doesn't matter they tend to fall down over time and disappear... so far SA is still here it is helping a lot of people.  It is not a pro drug site there are many of them .... you don't have to fight here about the dangers of these drugs.. we know they are dangerous we agree.  There are some doctors and advocates that have been trying for years to turn this around.. if you would like to read up on them... most have websites...

linked here at SA

 

Whitaker... Healy... Glenmullen... Grace E Jackson... Breggin.... Helen Fisher... the list is very long that is all I can recall just now and that is good for me ...shows I had coffee

 

I hope I have not crossed the line of offence with anyone in this post as it was not my intent... 

 

I wish you all peace

[btdt]

No matter how you look at it cold turkey is a rough go I did it too and do not ever recommend it to anyone else.  I use to see many people suggesting ct on the topix site they said that supplements would cover the ct... but I did not think it would.  I was taken off effexor cold turkey by a doc he attempted to switch me to cymbalta it did not work. I would like to know how your wife is now and what are her main concerns or problems at this point.  We have a lot of experience here and I am sure there is some support and ideas that could be of help.  

 

Some of my  staples are epsom salt baths tiny amounts of magnesium... taurine sometimes again tiny amounts is all I can take. Deep relaxation was the vehicle that brought the first bit of relief I found and remains to this day... if she can't stand words or music yet the sounds of the ocean on head phones may do the trick.. heat on the spine helps.  This is the state where I found my first shift .. the more I do it the better I get... I should do it more. 

 

Please ask her what it is she could use a hand with and let us know.. of course anything you need to talk about is welcome too there is a relationship section here which I believe has a thread for spouses trying to support the wd person ..if there isn't there should be feel free to start one...

 

I wish you peace