Ill: «Au Contraire #3», Moiret Allegiere, 2017
The following two stories is a guest post, written by a friend of mine named Rory. In my opinion, his story is incredibly important, and as such need to be spread far and wide and heard by as many as possible. I hope you will find it informative and eyeopening.
I was asked by David Healy to write my own story after he read my comment on another RxISK story. I agreed but have been surprised how hard it was to sit down and do it. I knew the story, the words were in my head. Yet I avoided getting started. Perhaps it was because of the painful emotions I knew it would bring to the surface. Or maybe because it reminds me of the pain and suffering my family had to endure, how much we lost and the fact that I may not be able to do anything about it. Or it could be my frustration from the cognitive difficulties I still have, making writing a difficult task that drains what little energy I have.
My trip started this way: I was ill, injured and in pain. I went to my doctors for help, and they proceeded to drug me into oblivion. My PCP or “family doctor” diagnosed me with fibromyalgia. I don’t think he really knew what I had, but once he put a name on my symptoms, he started throwing drugs at them. I was in constant pain, chronically fatigued and began to have severe bouts of anxiety. For four years I saw doctor after doctor but none of them could tell me what was wrong, or why I was getting worse not better despite all the drugs. It turns out I had autoimmune arthritis. I’d had it for 30 years, and since it was misdiagnosed and untreated for so long, my spine was a total wreck.
I have worked in construction for 38 years, as a skilled tilesetter with my own business. I love the work but it can be rough on the back. I am now on disability due to a combination of my disease and the multiple toxic “treatments” I was put on.
Seven seizure warnings… and five for serotonin syndrome
From the beginning of my four-year search and the two years following my diagnosis I was on an ever-changing cocktail of drugs that kept me off balance constantly. I was at that time unaware of the drug companies’ influence on medical practice, and I trusted that my doctors knew all about the drugs they were giving me. Big, big mistake! They knew very little about the drugs and the “side effects.” They, like me, believed what we are told about side effects – that they are “mild and rare.” Nothing could be further from the truth.
My drug list started with Wellbutrin, Trazodone and Flexeril. When Lyrica and Cymbalta were added, the real trouble began. At the end of six years my list of drugs included, among other things, FIVE major drug interaction WARNINGS for serotonin syndrome. FIVE! Not to mention seven warnings about an increased risk of seizures. And not one doctor saw that as a problem. If they did, they didn’t say anything. I carried my drug list to every appointment, so all my many doctors had my updated list. None of them said anything about the dangers. Neither did my pharmacists.
Being somewhat of a health seeker, I really didn’t like taking all those drugs and worried what they might be doing to me. I asked friends about it. They said “The doctors know what they are doing, trust them, take the medications.” My meditation/self hypnosis counselor said, “I have several clients, some of them pro athletes, who take multiple meds. I tell them to concentrate only on the positive effects of the medicines, not on the negative effects. That way your body will know what to do with the medicine.” Hmm, that didn’t work out very good for me.
How to become an alcoholic in 30 days or less
Before my trip through the Pharma looking glass began, I had quit drinking altogether. I had been sober for five years, solidly sober and liked it. In October 2010 I was on Trazodone and Wellbutrin. When Flexeril and Naprelan were added, within weeks I suddenly had strong urges to drink, which had been totally absent until that point. I now know that Flexeril (cyclo-benzaprine) acts just like a tricyclic antidepressant and should never be mixed with trazodone or Wellbutrin. The urge and the thoughts of drinking came on suddenly and very strong.
I made two trips to alcohol rehab, attended AA regularly but could not stay sober to save my life. I had numerous run-ins with the law as well. My behavior had become so bizarre, unpredictable, unstable and dangerous that I thought I had lost my mind and myself completely. I had no control over my thoughts, emotions or behavior, no matter what I did or how hard I tried. I watched my family suffer horribly in fear and confusion at what was happening.
Now I know why. Drugs can drive people to drink for relief from the agonizing akathisia that they cause. Couple that with the disinhibiting effect of the drugs, and it’s a recipe for alcoholism. That’s not just true for the antidepressants, but Lyrica too. The warning on Lyrica says that “People who have had a drinking problem in the past may be prone to abuse Lyrica.” It really should say: “If you take Lyrica you may have strong, uncontrollable urges to drink.” Lyrica can cause alcohol abuse, I have no doubt. So can Cymbalta, Zoloft and several other drugs I was on. I didn’t have a chance in hell to stay sober on those drugs.
“One way or another, this is going to stop.”
By April 2014 I was at the end of my rope. My life and my mind were coming completely apart, and I and everyone else who tried to help me was helpless to stop it. I went to my PCP or family doctor, whom I had not seen in quite a while. I explained what was happening and told him that I could not go on this way. “One way or another, this is going to stop,” I told him. He understood what I was saying.
I handed him my medication list and asked if he saw a problem. By that time it included 12 drugs: Cymbalta, Lyrica, trazodone, Trileptal, gabapentin, Wellbutrin, tramadol, Soma, Amrix (more cyclobenzaprine), Etodolac, lisinopril and Sprix (ketorolac). Some were for physical pain, some were for bipolar disorder, and some were for both. The lisinopril was for blood pressure.
He immediately became alarmed, saying “Who prescribed all this!? You can’t take all this at once! This is lethal! Serotonin Syndrome. You have to stop!” He had sent me to a psychiatrist a couple years prior to this because of my behavior problems, depression and what he thought might be bipolar disorder. The shrink added more drugs, never suspecting that my problems were all drug-related. The more he drugged me the worse I got. He blamed me – it was my worsening mental illness, he said.
I stopped five of the drugs my PCP had checked off on my list that day—cold turkey. The doctor did not warn me about what might happen if I stopped all at once, and I didn’t have a clue this would be a problem. The next few weeks were torture, but I made it. I don’t remember much about that period, and maybe that’s a good thing. I do not know why I was able to stop that many psychoactive drugs at once and survive, but I did. Several doctors and counselors have commented that I was either very tough or very lucky, or both.
After about two months I noticed I was different. I was sober, and I stayed that way with little effort. My anger, irritability and restlessness had come way down the scale. I could actually think, read and comprehend what I was reading. Something had changed, and I wanted to know why. I started researching; behavior change, causes. I found that chronic pain, chronic fatigue and many physical illnesses can cause behavior changes.
Then I found the RxISK.org site. The most surprising thing I found was how prescription drugs could be responsible for severe and uncontrolled behavior problems. The very same problems I was having! So why did none of my doctors recognize this? Did they not know this about the drugs they were giving me? If they did, they did not tell me.
What some are saying about drug companies running the information show and hiding the truth about their chemicals appears to be very true. Very few doctors are aware of the risks involved in the drugs they so willingly hand out. My shrink was the worst offender. He obviously did not have any clue that all of my symptoms were drug-induced. He followed the DSM to the letter and I was at the point of suicide. I know that to be true since all my symptoms have miraculously disappeared since I stopped taking the drugs.
Imagine that. I didn’t need the drugs after all. They were not helping, they were hurting me!
Is anyone looking out for the patient?
When I went back to my PCP after coming off most of the rest of the drugs I had been taking, I took along a RxISK report for Lyrica. I asked him to read it, and sign it if he agreed that my symptoms could be from Lyrica. That is what is suggested on the RxISK site: take the report to your doctor. I had multiple reports for the different drugs, but decided to take just the one since he was so insistent that Lyrica would help me and that I keep taking it. My RxISK score was 8 out of a possible 9, meaning it was very, very likely my problems were connected to Lyrica.
He read it and said he had never heard of any of this about Lyrica. He knew nothing about mood or behavioral side effects from that drug. He would not sign the report, out of fear of being sued, I guess. He acted very nervous and apprehensive. He asked if I was going to sue him, or sue someone. He kept asking about RxISK: “What is it? What do they do? I’ve never seen this before.”
His response to the RxISK report dampened my willingness to do that again. However, I may now have the will to take the rest of the reports to him and my shrink. That would be very interesting to see the look on his face, my shrink. I might just do that.
Recently I talked to the doctor who treats my autoimmune condition about that medication list. I had showed it to him back in April 2014, right before I saw my PCP and stopped the drugs. To my surprise, he said, “I saw that list and I remember thinking, how is this guy even standing in front of me today? Why is he not dead?”
I asked him why he didn’t say anything at the time. He said, “I can get into a great deal of trouble by criticizing the prescribing habits of other doctors. Legal trouble.” WOW. I did not know how to respond, so I didn’t. I just thought about it for a while, what that means for patients. Your doctor might not look out for you, even if your life is in danger, for fear of legal trouble.
I have taken my med list to my pharmacists also, and asked them for their opinion. All of them said it was way too much medication, with several duplications—two meds that do the same thing. I asked why they did not say something to me as I was getting these prescriptions filled. They said, “Well, your doctor prescribed it, so I guess he thought it was OK.” Another said, “You didn’t ask.”
What writing this has done, I hope, is renewed my willingness to pick up the ball and continue spreading the word about pharmaceuticals and the dangers. I am planning on taking the RxISK reports to the prescribing doctors and to pharmacists. There seems to be so much lack of knowledge and apathy about drugs from the people who prescribe them and sell them.
Every time I hear on a drug commercial, “Ask your doctor,” it reminds me of just how bad the situation really is, and how ridiculous the phrase is. Ask your doctor about ________. Really?
A couple years ago I wrote my story and posted it on http://www.RxISK titled: “My Trip Through The Polypharmacy Blender”
Below is a short summary followed by an update on my life as it is now. Many thanks to Bob Fiddaman who kept encouraging me to finish this after several starts, fails, and stalls. It is difficult to write due to having to relive the painful emotions of what I had to survive and live through while telling this account of my life.
In short, I was ill, injured and in constant pain. I went to my doctors for help and they proceeded to drug me into oblivion. I had been in pain for a long time, years in fact and it was getting worse, interfering with my ability to work and function in every area of life. I went to my PCP or family doctor because after all, he knew me well and I could trust him. After a quick and mostly verbal exam, he diagnosed me with fibromyalgia and started prescribing medications. They helped a little but not much so he kept adding and changing medications. Little did I know that he, like the majority of doctors, did not know much about the drugs he was prescribing and what they actually do to a person, physically and emotionally do to a person. He, like most doctors and patients, believe what we have been told about prescription drugs. They are safe, effective and the “side effects” are mild and rare.
Nothing could be further from the truth. The “side effects” are not mild and they are not rare. Drug companies have done an excellent job of deceiving most of us about the truth of what these chemicals actually do inside a body. I began to have emotional and behavioral problems after a few short months of “treatment” with medications so my doctor sent me to a psychiatrist. That was another huge mistake, one that cannot be exaggerated enough. The shrink added more drugs on top of what I was already taking, completely ignoring the drug interaction warnings and completely neglecting to inform me of what to watch out for. The more he drugged me the worse I became. My emotions, my behavior, my life spiraled out of control and I was at the point of suicide to end the horror of what my life had become.
Five major drug interaction warnings for serotonin syndrome. Seven for seizures and blackouts and he said nothing to me. Neither did any other doctor I was seeing nor any of my pharmacists. No one said a word about it until I specifically asked my family doctor when I went to see him out of desperation and as a last stop before ending my struggle the only way I could think of ending it.
I asked my PCP if he saw a problem with my medications because I was not getting better but getting worse and I was at the end of my rope. When he saw the list he panicked, literally panicked.
“Who prescribed this? You can’t take all of these drugs together. This is lethal! You have to stop. Serotonin syndrome. You have to stop now!” All of my doctors saw my medication list each time I visited them. That is what we are told to do, bring your medication list to every doctor appointment. He was the first to say anything about my medications and I suspect it is only because I specifically asked him about it.
So I did. I stopped five of the medications cold turkey that day, five that he checked off on the list of more than ten prescriptions. That was the beginning of my recovery. A long and painful recovery that is still in progress.
Three Years Later
The pain was not fibromyalgia, it was autoimmune arthritis. It has a long scary name but basically, it is a form of rheumatoid arthritis that is serum negative for rheumatism. Undifferentiated Spondyloarthropathy or USpA. It is not uncommon, just not well recognized at the time and often misdiagnosed or undiagnosed as in my case. Because it was undiagnosed for 30 plus years it really made a wreck of my spine and shoulders. Three multi-level spinal fusions repaired the worst of the damage but there remains a great deal of structural damage and a good deal of daily pain.
The wreckage left by the disease is much easier to bare than is the wreckage left by the “treatment” by the western medicine model that uses pharmaceuticals and the damage they cause to lives and relationships and reputations.
What Is Left Over?
My marriage did not survive the ordeal and now I am no longer in touch with two of my three children due to the events related to my “treatment”. There is no doubt these events are related, in fact directly caused by my “treatment”. These events, behaviors, are spelled out in black and white in the FDA and in the drug company self-administered test research data and warnings. Spelled out clearly and precisely and then often followed by the phrase, «these side effects are mild and rare». Be advised, that phrase is well crafted to intentionally disarm the natural human self-preservation instinct we all have. The instinct to pay attention, to be alert to a possible danger and to act when we experience the afore-described phenomena. The phrase is very effective. Even effective on the professionals who prescribe and distribute those drugs because most of them do not consider the side effects important enough to mention to the patient. After all, the findings come from those who are educated and in authority so it must be true.
A side note; “Side effect” is a term created by drug manufacturers. Drugs do not have side effects. There is no such thing as a side effect. Drugs have effects. If one has a reaction as a consequence of taking a drug it is an effect of the drug. Calling it a side effect is intended to make you think it is unintentional, inconsequential and therefore not important. It really didn’t happen or really does not matter because that was not the reason you took the medication. The term is an intentional disarming tool created and skillfully used by drug companies.
Another phrase often used by drug companies is, “your doctor has determined the benefits outweigh the risks of using this medicine.” Did your doctor actually say that? Does your doctor actually know that is true, is it a fact or at least a realistic expectation?
Interestingly the doctors are just as susceptible as we are to the power of suggestion of these phrases. The truth is our doctor often does not know what the risks are. They have not bothered to research the risks, instead relying on what the drug company sales representative verbally told them in the office sales pitch about the drugs. Sadly, that is as far as most doctors go with research on the tools they use to treat you with.
What Is Left Of My Life Now I Am Alone?
I have a few friends and a few family members who understand and support me. I now have a criminal record as an abuser. Something completely opposite of my true character. That is what the drugs are capable of doing. They can and do change a person to someone they are not.
Take a person who is ill, injured and in pain, put them on mind-altering chemicals that cause serotonin syndrome, akathisia, and disinhibition and see what you get. You get a person stuck in the fight or flight mode. A person who is in survival mindset and who has lost control over how they act regardless of what they know to be right and wrong. Contrary to the belief of many, even professional councilors, it is possible to cause a person to lose the ability to choose how to act 100% of the time and choose how to behave at all times. If you think that is not true try it yourself. It is entirely possible and even very likely that if you alter a persons brain chemistry that person will lose the ability to choose how to behave. They may be able to choose most of the time but not all of the time.
So today I carry around a criminal record as an abuser even though my true identity is nothing like that. My life up until this point had a nearly spotless record save a few traffic tickets, most of which originated in my youth. I was an upstanding, law-abiding citizen, so much so that I had a license to carry a handgun concealed on my person if I chose to do so.
Now during the period of «treatment» in the form of drugging with as many as 12-14 psychoactive pharmaceuticals at a time, all legally prescribed and taken as directed, I was a menace to society. Not so much to society really but more to myself and to the people I loved the most and who bore the brunt of my drug-induced and akathisia driven behavior. Chemically altered, I was not myself and I was helpless to do anything about it.
Now having some time to somewhat recover from the drugging and from the emotional turmoil, I wanted to do something to help myself and other individuals and their families, possibly saving them from a similar fate or worse than the one I had to endure. At first, I had anger toward the doctors whose negligence caused my and my families suffering. I went after a way to try to recoup some of the monetary loss caused by their mistakes and at the same time hopefully dissuade the doctors and pharmacists from being so careless in the future. I contacted some 20 law firms, presented my evidence to them and asked if they were interested in representing me in a lawsuit. All of them said I had a strong case, most of them said I had an 80-90% chance of winning. However, they said, because of Tort Reform in Texas limiting the maximum award amount to $250,000, it would not be profitable enough for them to pursue a lawsuit. They said it costs about $100,000 to prosecute a medical negligence case and that there would not be enough money left over to make it worth their while to take the case. It’s not that I couldn’t win, just that they could make more money on other types of cases.
OK, I thought, I’ll go to the Texas Medical Board first and try to obtain a ruling or sanction against the psychiatrist first, then threaten a lawsuit and force him to settle without a trial. Surely that would work in my favor. Wrong again. I filed a complaint and waited for an answer. After two months waiting, I received a letter with a two-sentence denial stating there was not enough evidence to show the «good doctor« was negligent in his treatment. I was really surprised because I was very careful and methodical in putting together all the evidence. I had my medical records from him and all my doctors including his notes from each appointment, pharmacy records, testimony from my wife who attended most of my appointments, everything I needed to show that he prescribed multiple medications that I should never have been taking simultaneously. Records showing cold stops and starts with multiple psych drugs simultaneously, multiple drug interaction warnings, no instructions about side effects to watch for, reporting from my wife and I about my condition involving anger and aggression. It was all there in black and white.
Stunned, I filed an appeal, went to Austin for the hearing and testified with all of my evidence which was very clear and sufficient to show negligence.
I was stunned again with a ruling that there was not enough «clear evidence» showing negligence. I could not even get validation that anything wrong was done. I could not get the powers that be to acknowledge I had been treated incorrectly. I could get no validation that the doctors and pharmacists had done anything wrong. The evidence was there. It was clear and condemning, even in the doctor’s handwritten notes.
You see, the Medical Board is made up of doctors and healthcare providers and they protect their own. They too may one day need the protection of their peers so they are not about to stain the water by punishing one of their own.
So here I sit today. My life completely uprooted, burnt and in ashes from the firestorm of «treatment» I received because I did what I was supposed to do. Go to your doctor and follow his/her instructions. And there is nothing I can do about it. I cannot even get validation that anything was done incorrectly. What irks me even further is that these healthcare professionals were paid well to practice medicine in this way. They were compensated well, praised for their work, respected by the community and their peers while all the while making me out to be the bad guy, the one who was sick. I trusted them and paid them to destroy my life.
The justice system is just as bad. They believe what they are told by professionals in the medicine and healthcare system. Furthermore, they feel compelled to dish out justice when something wrong is done but they suffer from a systemic flaw that does not allow them to find the real culprit. The pressure is on them to do something and they automatically take the easy and most obvious route at dishing out punishment directed at the most obvious offense, even though the offender may not be the one truly at fault. The offender may be a victim as well. But, it is easy, safe and more economical to focus on the most glaring, the most currently popular and trending knee-jerk, emotion-triggering act. Physical abuse. They go home with a win in their pocket and a sense of accomplishment without being questioned by anyone and without ever having to ask the difficult question. Why? What caused this? Who is responsible for this? What contributed to this?
For this, they are compensated and praised by everyone. That praise cements their conviction that they were right, that they did the right thing. Besides, even if they did know or even suspect that the prescriptions were the cause they face a huge uphill battle against wealthy pharmaceutical companies who hire expert lawyers. Lawyers who know how to obfuscate and twist the truth so there is doubt enough to absolve them of guilt. A win would be hard to get and a loss would not look good on a prosecutors record. That record of wins is how they are graded and compensated so getting at the truth is not their first priority, winning is. That is a systemic flaw preventing true justice being done.
I am left wondering how many times this has happened to unsuspecting people. People who still probably do not know what went wrong. People who are left thinking they are at fault when in fact the fault squarely rests on the healthcare providers and the pharmaceutical companies who peddle this poison and intentionally mislead doctors and the public about what the drugs actually do. It is 10 months since my trip to Austin and the humiliating experience of being blamed again for what was clearly not my fault. I am just now beginning to feel like I can pick myself up and try to salvage a life from this mess. Just now groping to find the will to get up every day and find a positive attitude so I can move forward. I’m still not sure what I want to do or even what I am capable of accomplishing. I want to continue to try to make a difference, if for no other reason than to possibly help prevent some other persons and families from having to suffer this kind of hell. Just not sure what to do at this point. Somehow I have to find a way to support myself since my wife divorced me and took away the last bit of security I had in this world. After supporting myself I will have to dig up the energy and will to continue trying to make a difference. That is hard to do because I have been having to swallow the bitter pill of defeat each time I made an effort to do something.
Lessons To Be Learned
One invaluable lesson I have learned is to trust no one and no institution until they earn that trust. Not healthcare, not the justice system, not the Medical Boards or any other consumer safety organization and certainly not any business institution such as pharmaceuticals who have a profit margin at stake. If I sound jaded or angry it is because I am. I am with good cause to be angry, not just because of what happened to me but because this continues to happen every day to other good people who often never learn the truth. My Dad was one of those good persons. He died thinking he was sick, but that is another story to tell. A life completely destroyed by negligent treatment by healthcare as it is today.
Lives are being destroyed for the sake of profit and the guilty go unpunished.
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