By Rory Tennes
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.
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.
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.
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!
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?